Monday, September 26, 2011

The dark path and the lightening bolt

My friend wrote me of a story she remembered about a man who was walking in the dark, and couldn't see his way. Suddenly there was a bolt of lightening, and it lit his way for a brief second. With that bolt of lightening, he was able to get a glimpse of where he is going. Then it was dark again.

That was my one day of magic, the day I wrote about in my last entry.
I think this medicine will work for me eventually, but it has to be "tweaked", as another friend says. I think we got the general direction from the lightening bolt... now we have to sniff out the rest of the pathway.

The day after that I had what is called "breakthrough pain". So, I took basically what is a booster for the fentanyl, and it apparently was too high of a dose. Knocked me for a loop. I got up again for the next round (I always do). I replaced the patch on Saturday, as it was the fourth day; the patch lasts three days. Well, there wasn't good overlap, so I got into pain again on Saturday. When the new patch did kick in, it also knocked me for a loop... nausea, then I wound up sleeping all day. We had guests over, and I'd have liked to have spent time with them. Nope, I was in bed... again.
Today, the second day of the second patch (get it straight :-)), I had less pain, no nausea, and plenty of energy. I am in pain now, however, midnight (actually 1am), and tomorrow is day three. I replace it on Tuesday. I meet with Dr Z on Tuesday. Maybe we'll raise the dose, I don't know. I seems my pain needs a higher dose, but my body can't take it. It throws me down each time.

I had one day of a taste with no pain. I can't go back.

And, as if life weren't complicated enough, I am ~also~ in the process of going off of a medicine I have been on for four years, since my PTSD started after the NF. I have to go off it, it is contraindicated with the high dose of Lyrica I take (600/day). We are going down **very** gently, but I think I feel it a bit. Not in the physical way I usually feel meds ending, but I feel my mood changing a bit. It is so strange to just get outside of myself and look at what is going on.

All of this makes it really hard to parent well.
All of this makes it really hard to feel internal quiet.
The amplifier in my head is back... everything is too loud for me.
Life is too loud for me.

The pain is very loud for me.

Not very happy with life right now.
This is how I am going to bring in the awe of the Jewish new year approaching in a few days?
Help... spiritual help, I invite you to please crash this party and make yourself known...


  1. Darling Sarah,
    I hear you and feeeel all you share. Sometimes it is, indeed, hard to believe we are exactly where we're supposed to be.
    All the while, better (!?!) than we could have planned, more than we may have chosen, our souls are ripening... hearts stretching to their required shape.
    You know that Gd chose you for your unique and special role.
    Please don't do more than you feel able. Take nourishment in any form it comes to you.

    I love you dearly. Shari

  2. Sarah,

    I was thrilled to hear of your pain-free day. As you know, I have another friend who is also suffering chronic excruciating pain following surgery to remove a tumor from his leg. I forwarded your message to him to see if fentanyl patches might give him some relief, too.

    He wrote back about his experience with fentanyl two years ago, which I'm taking the liberty to forward to you (see below). Obviously your cases are very different, but I thought there might be some cautionary messages here that you should know about when you talk to your pain doc about it.

    If you want to talk to Hillel for more details or to "compare notes" I'm sure he'd be happy to do so.

    Wishing you a sweet, happy, healthy & pain-free new year,

  3. Honey!

    My heart goes out to you.
    One step, one breath at a time.

    Keep strong,


  4. wishing you a refua shlaima, completely and speedily! shana tova u'metuka to you and your family. may we all be able to greet mashiach this year in jerusalem! love rochel.

  5. What a great analogy... The lightening bolt...
    Meshiach should come soon, amd we should all feel illumination in the dark...

    We all wish you a healthy and sweet New Year of bra hot and shalom.

    Dev and mishpacha